Expectations Versus Hope

By FASD_Mum
(With a special guest response below from educator/advocate R.J. Formanek, an adult with FASD who reminds us here at FASD: Learning with Hope, of the importance of hope )

We sat there in the hospital in a confusing, brightly lit room, with several huge screens mounted on the walls.  The biggest one was blasting the news.  Subtitles scrolled across the screen.  A loudspeaker intermittently called out instructions, perhaps about incoming ambulances.  It was hard to hear.  There were all kinds of mini-dramas happening, heart-wrenching and confusing to watch.  An old blind man headed for a window he thought was a door.  He was hoping to sneak a cigarette, my husband discovered when he offered help. An old woman in a wheelchair was left all alone for hours, nodding off and then waking with a dazed look.  A grandfather who was still joking despite had a stroke, surrounded by several grandchildren.

My own head was ready to explode.  Because of the pressure, I was not hearing properly.  I could only half understand what was being said.  If I wasn’t looking at someone I couldn’t really tell if they were talking to me.  The nurses and doctors kept wanting me to go with them alone, without my husband, but I felt clingy.  I wanted him with me.  I was only catching part of what was being said.  I wasn’t sure I understood everything they were saying.  I could not focus.  I was confused and embarrassed by that.  All of the sounds coming from all of these different places were pounding down on me.  Echoing.  Reverberating.  I just wanted to be somewhere quiet.  The flashing images out of synch with the sounds were almost nauseating and deepened my feeling of distress.  I was disoriented and scared a little. (Who wouldn’t be while waiting for a stroke nurse even if you KNEW it wasn’t a stroke – and it wasn’t?)  I was overwhelmed.  This is not a familiar feeling for me.  I am usually in control. I felt impatient, snappy.

I turned to my husband and I said, appalled, “I think now I understand a little more what it is like for our son.”

It was a humbling moment.  What if?  What if this is what it is like for our child with FASD every time we go to the mall, every time he enters a busy school hallway, every time we have a family celebration in a small space?  What if he feels this distressed all the time, while I blithely try to push him through it?  All good questions.

But how does this relate to the Room Swap Ordeal of my last post, you may be asking?

I had promised an update.  I was preparing a sweet post about how much our little one LOVES his new room.  How he loves his new bed on the floor with the rainbow duvet. How his first action was to spend an hour organizing his pens and markers and paper for his new desk.  How he has been reading more, doing 10-minute workbook times tables exercises. How he asked to watch a music concert DVD on the laptop from his new little fully cushioned hidey-hole/calm space and sat there contentedly rocking in that space we hoped he would use for just this purpose.  How he showed me with pride that he MADE HIS BED the next morning without prompting –  the first time ever.  There was much that was so good about the first night.  I wanted to capture that because I suspected the glow would not last very long.

Unfortunately, that was truer than I realized.

Moments after we celebrated the Big Bed Making Win on the first morning after the move, the phone rang.  A furniture delivery was imminent. We had been given an 8.00 am – 12.00 window, so guess what time they were coming? OF COURSE they were arriving at 8.00 am before we could tuck our son safely at school at 8.15.  OF COURSE they were coming before we could have help moving two mattresses.  OF COURSE I should not have been moving anything as heavy as a mattress.  (You can see where this is going…)

Right after moving the mattresses, I knew something wasn’t right with me physically.  I had a sense of fullness in half of my head, and my hearing in that ear was off. Having had a scare recently, it was not something I particularly wanted to think about at all. I pushed on. (And, to my dear husband who somehow thinks this is his fault, for the record it was on me, not you.  I chose to do what I did.  I didn’t think anything was THAT wrong or I would have stopped.)

As the superhuman delivery guys were quickly bringing humungous boxes up our stairs, our little guy was literally pinging off the walls in his new room, having discovered that with the mattress we had now added to his futon on the floor, he could actually do both front and back flips on his (previously made) bed.

Once the delivery guys left, getting him to school was Not Easy.  Screaming, spitting, wailing, complaining of tummy aches, we got him there.

Now the clock was ticking.  We had a heck of a day ahead of us.  This furniture is Big Kids’ Stuff, thankfully not flat-packed for the first time in our lives, but it still needed to be carefully unpackaged with help from family members.

It’s a fair question to ask why we took all of this on at one time.  Our son got a bigger room as we swapped his room with our office.  But there was another reason for this upheaval, and it’s not unrelated to a blog about FASD.  My husband and I need our own zone of calm.  Somewhere along the years, our bedroom had become a dumping ground for those things that don’t fit anywhere else, for handed-down hand-me-downs, for half a US mattress set that no longer had a box-spring and which attacked our backs as a result.  The room was an afterthought.  It kind of mirrored our relationship, which has taken a battering over recent years. It’s made of strong stuff or it would have fallen apart sooner.  We took a bold step in March, for our anniversary, and decided we had to invest in us.  A trip was out of the question, however much we need a getaway.  We decided to make our room nice, so that we have a place to go, where we can close the door and regain our peace – as a weary couple and as extremely tired individuals.  Our days are fraught with tension.  We take too many shortcuts with each other.  We desperately need to be able to close the door sometimes and just relax.  We are supremely aware that pressures of raising a special needs child on top of otherwise busy lives can drive couples apart.

So, we took a bold step and ordered furniture on monthly installments and there it was, in our room, unpacked finally with the help of family, but still unusable in the short-term.  It needed to be waxed 24 hours after unpacking.  The hallway and our new office was overflowing with green bin bags full of clothes. Our eldest son’s room was left also only partially reorganized.  Pictures were leaning in precarious places. My mom’s not-very-well boxed set of china that survived all those years intact (not one broken or chipped piece, she used to brag) is in our living room, apparently irresistible as a seat (while I try not to hyperventilate).

Over the next days a charity came to take away old furniture, including a wardrobe that precariously housed toys downstairs (and caused an avalanche every time someone tried to get one out).  Our (we now discover wrong) thought was to move many of the toys up to our son’s new room so we can have another workspace downstairs, freeing up our unusable dining table from being covered with laptops.  The wardrobe is gone, and the dining table is still now covered with those excess toys with too many parts that even we know would be a disaster to move up to his room.  After our son threatened to squirt us with the now-reachable paints that had been on top of the wardrobe, we have at least moved those to an undisclosed location.  We aren’t, after all, entirely oblivious and having a full squirty bottle of red paint pointed one’s way is a fairly effective reminder.  (Thank goodness the cap was on tight.)

Meanwhile, on each of those first two nights I couldn’t hear out of my left ear. So, in the midst of all of this moving madness – china in the living room, toys in the dining room, clothes in bin bags in the hallway and the office unreachable, master bedroom in chaos – I then needed to go to the GP, talk to doctors and spent hours late one afternoon being seen in the local A&E, where they decided the stroke nurse needed to check me out (it was NOT a stroke).  Stress levels throughout our world escalated phenomenally, dovetailing nicely with the increasing but intermittent feelings of vertigo I have also been experiencing.

So.  Here we are.  Six days post-dining room lake episode, living in worse upheaval than we started with.  The road to hell, as they say, is paved with good intentions.

And yes, we have created a little mini-hell not only for us, but most detrimentally for our struggling son.

Our son’s schedule has been disrupted because of my mystery illness.  Even when heroic friends stepped up on short notice to look after him while I was at the hospital, it affected him. His sleep schedule is totally up-ended – he has been waking up in the night and playing with the toys now too easily available to him.  He has been obsessing about recreating school plays behind the new curtains in his room, fixating on the lighting, the best angles for recording his productions.

His new very bouncy bed in the corner on the floor has become a kind of Valhalla. This is now his hallowed ground.  He is in his flying, flipping, tumbling glory on this mattress.  We hear it at odd times.  It has unwittingly become a space of constant battle, a battle we lose.  To avoid engaging in the battle, we have been known to leave him be.  (To be fair, it’s probably safe enough, at least while the inner-springs on the hand-me-down cheap mattress last.  And we have after all paid quite a lot of money over the years to develop these gymnastic skills.)

As if all this was not enough, he has been having Year 7 exams all week at his secondary school and today, today is the Summertime Ball – a several hour musical extravaganza at Wembley Stadium.  Following his successful concert attendance a couple months ago, in lieu of a birthday party in late July, we planned to bring him and a friend to this event.  But I cannot go given my health, and there is no one able to step in.  My husband now is facing a day alone with two kids in one of the most overcharged environments possible. These tickets aren’t cheap, and another kid’s hopes are resting on this.  We cannot just cancel.

Not unsurprisingly at a time of great stress, our son has ramped up and we are not as resilient as we must be.  (I have learned it is hard to parent with neurobehavioral panache when you feel like you are standing on a boat that is about to tip over.)  He is not eating well.  He is becoming increasingly antagonist.  He sees our stress and mirrors that back to us in the most unflattering ways.

Last night he started a chant of “cry baby, cry baby” that went on for longer than I thought it could.  It was aimed at my husband, who had finally broken down in a sort of PTSD reaction.  (Yes, fellas, we know you feel these strains too. It’s important for our kids that you own up to it, show them it’s okay to show emotion.) Our son soon realized that while this phrase was far from the rudest he used, this one hit a mark and he kept chanting it.  At first it seemed directed toward my husband and later toward my room-rocking distress. Probably, more accurately, he was perseverating but in any event it was not pleasant.  I kept my cool, very quietly reinforcing we must use polite words, asking in my most neutral voice where he heard that phrase.  When I learned it was from “Alexander and the Terrible, Horrible, No Good, Very Bad Day,” I simultaneously was impressed that he was applying something with such accuracy from one of his books and then instantly began to doubt the wisdom of exposing our children to books at all.

This morning our son has been in full meltdown, after a week of continual stresses.  He doesn’t want to go to the concert.  “Do you know how many people will be there Mum? 80,000!”  “I’m tired!”  “It’s going to be noisy, and the earphones won’t block it all.” “It will be dark, past my bedtime!” “I won’t be able to see the stage.” His fears of the unknowns are outweighing the wonders of the treat we know is in store for him.  But he is not wrong, all these things will be challenging.

We finally got him out the door for a pre-concert meet up with one of his friends (having had to cancel his singing lesson for today as he was clearly not going to do that).

My head is pounding.

Life sometimes just forces you to sit down and take stock, even at the most inconvenient times.  That is frustrating beyond belief for someone who is used to getting things done.  Taking that proverbial stock now, I see evidence of a whole lot of good intentions all around me.

Thinking back now to my A&E realization, in the face of all that chaos, incoming stimuli, and confusion, all I wanted or needed was a cuddle and to be told I was going to be okay.

Don’t we all?  This is most of all what our son needs.  Over and over again.  It is so hard to remember because of the way his distress plays out, wrapped up in some truly unpleasant behaviors.

I do know it is going to be okay.  We will be okay.  This is all on us, not on our youngest son who is coping as best as he can.  Sure, we can (and do) kick ourselves, blame ourselves, feel sorry for ourselves.  But none of that helps.

As they say, the only way to go through a hard time is to go through it.

Soon.  Soon we will have rearranged, peaceful spaces in our house.

Please remind me of this vision six months from now when I finally find a place for those two rather large electric circuit kits that no longer have a wardrobe to hide in precariously.

And someone please, for the love of all things, please lose again that recently unearthed Bop-It!

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R.J. Formanek* responds:

It sounds like one hell of a week, if I may say so. It never seems to rain, but it pours, and this is a heck of an example.

Your description of the cognitive degeneration you were experiencing does sound very much like something many of us experience. Our brains are set up much like a ship, with a series of “water tight doors” that are designed to prevent damage during a flood or emergency. The brain tries to limit the damage by confining it to affected areas, while trying to protect that which is not affected by cutting off access to those parts of the ship not already affected. 

BUT… (here’s the real kicker!) each of those doors has in it a small window through which we can still “see” what we can no longer access… we know it’s there, but can not use what ever is down those corridors any more.
We are left with a description of how our brains are supposed to normally work… and that confounds the frustration to no end.
That builds on the anxiety and it becomes a vicious cycle… hence the reason the first thing a person needs is to feel SAFE.
What ever form that takes… safety first. 

You experienced that, and yes it is scary and lonely.

Only once that safety has been found can you stop the flow, and then slowly you can drain the flooded passageways and regain access to those corridors that are now blocked by the doors.
So, our brains have this built in safety circuit that can be armed to function at any time… and while it is built in to protect, as you see it can also be very damaging to the person’s sense of well being.

And yes, while this is going on invisibly we are still expected to be able to function on a day to day basis somewhat “normally”.
That would be because brain function and dysfunction are still so poorly understood by experts and the general public alike.
So, once again expectations of what should or should not be tend to colour our experience… on all sides.

I ask “Why would my brain tease me, and do this to me?”
They ask “Why would you do that?”
I guess there the answer would be the same:
“We just don’t know.”

I realize rather belatedly that this has rambled somewhat…
The brain is an AMAZING organ, full of mystery and secrets yet to be discovered… but it is just an organ after all.
I live with a certain type of dysfunction that is my own personal “normal” and if that were to suddenly change (let’s say for argument sake my brain damage were to suddenly be repaired, as to have never been there in the first place) I think I would PANIC to the max over that! I would not know my own brain anymore.
I fear I would lose a very important part of what makes me who I am, because it is IN that very diversity I find my own strength.
I would not know how to function… plain and simple.

So, in a kind of “backwards compatible” kind of way I can understand what it must have felt like to experience that.

And transitions? Transitions are expectations dressed up in their finest wares… but they are expectations nonetheless.

And expectations can kill.

They can kill dreams and hopes, fears and dreads…expectations can kill hope and joy… they are the culprits we have to deal with.
ALL of us. Every day is a series of expectations that either come true in positive or negative ways and outcomes.

Expectations are human nature.

And we all get burned.
Whether it is my expectations of myself and how much or how well I can do a certain thing, or society’s expectations of how I will do this or that… they are all expectations. Good or bad.

So, I try to change the expectations into HOPE alone… it is OK to hope for an outcome, while understanding it may not happen.
That is realistic… you can plan for bumps in the road.
But to rely on expectation alone is the loneliest thing in the world..
no one will ever fully live up to someone’s expectations.
By definition it’s not possible.

3 steps forward, 2 steps back is STILL a step forward, my friend.
In time the changes you have put in will become the new normal, but as you already know it takes time. You will all get there.

I am sending best wishes for your ongoing health concerns and hope with some stress reduction you can bring it all back to where you want to be. Take your time… get healthy. Hugs.  🙂

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*R.J. Formanek is an educator and advocate.  He is a founder and moderator of FASD: Flying with Broken Wings, a fantastic Facebook group for people living with FASD, and those who work with or care for them.